Parents know their child better than anyone else and have valuable information to contribute about the kinds of programs and services that are needed for their child’s success in school. To ensure the rights of children with a disability, additional laws have been enacted. The PA Parent Guide to Special Education is an invaluable resource.

Here are some additional resources to review:
2022 Back to School Guide - From the Education Law Center
PEAL Center - local organization that works with families, youth and young adults with disabilities and special health care needs
PaTTAN - Pennsylvania Training and Technical Assistance Network​
Resources to support positive behavioral outcomes for students
Celebrating Communities of Belonging for Students with Significant Cognitive Disabilities
The Power of Peers: Introduction to the Peer Engagement Implementation Guides
Down Syndrome: Guidelines for Inclusive Education
​Inclusive Instruction for Students with Significant Cognitive Disabilities
​Comprehensive Guide to IEPs
​Wright's Law FAQ's About IEPs

The Pediatric Down Syndrome Center located at UPMC Children's Hospital, provides families with the tools they need to become educated and strong advocates of children and adolescents with Down syndrome. The center staff:

• Provides specialty health care to children and adolescents that is specific to conditions related to Down syndrome
• Consults with families regarding challenging developmental and behavioral concerns in children with Down syndrome
• Provides information to families about Down syndrome
• Offers support and follow-up to children recovering from an illness or surgery at the hospital
• Assists families in locating community services and resources
• Works with families with adolescents in developing transition plans to identify health care and community resources, as necessary, for adult health and well-being

Services include comprehensive medical assessments and referral of patients to specialists by following the newly updated Pediatric Health Care Guidelines for Down syndrome. 

​The Adult Down Syndrome Center at UPMC is one of a few clinics in the world that:

• Devotes its full focus to adults with Down syndrome and remains unique in its team approach to patient care.
• Offers person-to-person time with adults with Down syndrome and their loved ones.
• Provides lifespan support – from prenatal diagnosis through adulthood. 

Services include comprehensive medical assessments and referral of patients to specialists by following the Medical Care Guidelines for Adults with Down syndrome. To share with your PCP's, is the Adult Care Checklist.

​Reach out to the DSC at DownSyndromeCenter@chp.edu or 412-692-7963

COVID & DS Updated Resource - Collaborate resource developed from national organizations.
COVID Vaccine Statement - Down Syndrome Medical Interest Group-USA
Down Syndrome Center Podcast - Dr. Kishore Vellody hosts this podcast series and listen for most recent COVID updates.
CDC's COVID Materials for People with Intellectual and Development Disabilities and Care Providers
Resources for Caregivers
​Educational Resources

Special Needs Personal Planning Guide by Acheiva Family Trust - Providing peace of mind to individuals with disabilities and their familes. 

Advocacy Toolkit for Self-Advocates - A guide to provide tools and advice to self-advocates with Down syndrome.

Family Care Toolkit - This toolkit is created for the caregiver as it is essential to have important information all in one place.
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NDSC's Adult Sibling Toolkit - ​Just for adult siblings, this toolkit is designed to jump-start conversations with parents about becoming more involved in their brother or sister’s life.

​Proper estate planning becomes even more critical if you have a family member with a disability, such as Down syndrome. There are many aspects to be considered so that your loved one can experience their best life without jeopardizing their government benefits.

A PA ABLE account gives individuals with qualified disabilities (Eligible Individuals), and their families and friends, a tax-free way to save for disability-related expenses, while maintaining government benefits. Federal and state law authorized the creation of PA ABLE accounts. To enroll or learn more, visit here.

Achieva Family Trust helping individuals with disabilities and their families plan for the future and enhance their lives through special needs trusts. They host webinars as well as offer individuals resources future planning.
Special Needs Trusts 101
​Special Needs Financial Planning with Bob Corcoran

Behavior can be frustrating and confusing, but a form of communication. Here are some tools and resources to help you navigate and better understand how to reframe behavior.
Behavior and Down Syndrome: A Practical Guide for Parents​
Understanding Behavioral Challenges
​Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond but Don't React Method